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December 18, 2019

Julia's been doing a lot of sleeping today, but she's been pretty comfortable. She needed some Tylenol/Morphine early on, but then nothing since. Vitals have all been... OK, possibly due to her deep sleep. (Heart rate 140s, respiratory rate 30s/40s, oxygen saturation low 90s, ET high 40s/low 50s, BP 108/55.)
They are continuing tests to find out why she's not peeing. It could be from the UTI, but they don't appear to believe that. She is still making urine, which is good, she just isn't getting rid of it. Their assumption is she has developed a neurogenic bladder, which is a lack of bladder control due to brain, spine, or nerve problems. An ultrasound was performed that confirms there is no buildup of pressure or kidney stones, so they can't see anything wrong. If treating the UTI doesn't solve the problem, then neurogenic bladder is the realistic cause. This would likely be due to growing tumors on her spine. So currently, they do a bladder scan every 4 hours, and if there is over 150ml of urine, they give her a catheter. A more permanent one is being considered, but the risks need to be weighed. I think they are giving the UTI another few days to resolve.
Yesterday Speech Therapy was able to get Julia's mouth open much more than she will allow with the regular staff. They found white... things, on her tongue. They are 3D and look more like growths than wounds. They're actually visible in the video of her laughing last night, now that it is known what to look for. The resident doctor got me pretty concerned, as infection disease, biopsies, and lack of resemblance to yeast/fungus were immediately mentioned. I assume the PICU has seen many cases of bitten tongues, so she must have seen something concerning. (But this resident also started by asking if Julia has "been complaining of mouth pain", so I have to assume she didn't thorough read her chart... as a toddler who is unable to talk or move obviously isn't doing much complaining.)
But both infectious disease and dermatology got involved, and it is their opinion that these puffy white spots are just due to repeat biting. Reed has noticed that with her increasing weakness, sometimes her jaw gets pretty slack while she's sleeping. And these two white marks are in the same place on both sides of her tongue, so we assume her tongue is getting pinched between her teeth when she sleeps, rather than actual biting, which we haven't observed.
She has been very tired today, and unfortunately, we've seen no movement at all from her right hand. She can still twitch her feet a bit, but that seems to be the extent of her physical capabilities right now. I guess luckily she still has one good eye to watch her cartoons...
We're really hoping she holds on long enough for these medications to have a chance to work, but she is getting worse by the day.
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So many people have been asking what our family can use for the holidays - we can't think of anything. We've continued to be taken care of financially, with gas cards/food vouchers, and with Christmas gifts for the other kids, so we don't need anything at all right now other than a miracle for Julia. Thank you so much for asking <3
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Video in comments. Slow hospital internet for upload.